Hemophilia is a bleeding disorder that prevents blood from clotting normally due to insufficient clotting factors (blood-clotting proteins). People with hemophilia will often bleed longer after an injury and may require special care to prevent more serious disease complications.
Hemophilia is not contagious like a cold or flu. It is usually inherited, which means that it often runs in families. About 70% of hemophilia cases are inherited, in which a parent who either has hemophilia or carries the “hemophilia gene” passed on the disease to her child. In the remaining 30% of cases, hemophilia occurs spontaneously or develops and is not inherited.
Most people with the disease suffer from hemophilia A or B, depending on which clotting factor their blood is lacking. Patients with hemophilia A lack sufficient levels of clotting factor VIII, and patients with hemophilia B lack sufficient levels of factor IX.
Regardless of hemophilia cause and type, treating hemophilia requires increasing or replacing factor levels. Prolonged bleeding episodes are treated with infusions to replace the lacking factor and enable blood to clot more effectively. Hormone drugs and other therapies may help the body produce more of the missing factor.
For those with severe hemophilia, routine prophylactic infusions may prevent bleeding episodes or reduce their severity. Infusions can be received in a specialized treatment center, through a home-nurse visit, or by self-infusing. Many of our patients decide to self-infuse for the convenience and freedom it provides. Learn more about self-infusion and other treatment options.
Although there’s no cure for hemophilia, with the right care and support, patients who have hemophilia can lead long and healthy lives. Home care options offer increased freedom and quality of life. Early diagnosis, preventative treatments, and replacement therapy have extended life expectancies.
There are several bleeding disorder support groups across the U.S. They bring together hemophilia patients and caregivers to offer encouragement, education, and community. NCHS is proud to support Hope for Hemophilia, an organization that support hemophilia and bleeding disorder patients in times of need. Hope for Hemophilia Hope Groups meet regularly across the U.S.
NCHS sponsors the Powering Through program, a nationwide live event speaker series for and about the bleeding disorder community. These free events feature members of the bleeding disorders community as well as inspiring friends. Both the live events and the podcast are hosted by community member Patrick James Lynch.